As much as Jonathan Pitre would love to be just like any other teenage boy, a rare terminal genetic condition prevents him from ever knowing what that’s like.
The 14-year-old from Russell, Canada, suffers from Epidermolysis Bullosa, which causes his skin to blister and makes everyday activities such as bathing, eating and drinking incredibly painful, reports the Ottawa Citizen.
His skin is as fragile as a butterfly’s wings — just the slightest touch and it comes off.
Because of the condition, Jonathan “has constant headaches and nausea, and often spends nights awake in agony.”
In the video above, you’ll see how his mother, Tina Boileau, helps take care of him.
Despite his situation, Jonathan is living his life to the fullest, and plans to use what time he has left here on Earth to raise awareness about his disease.
According to The Mirror, he has raised more than $77,000 for DEBRA, a charity for people with Epidermolysis Bullosa, in hopes of finding a cure.